This blog is about my experiences with hypothyroidism and to swap notes with other people. I was diagnosed in 2009 and am still not entirely well, though I’m much better now than I was. I set up a thyroid patients' support group in London in 2010 and we continue to meet regularly and welcome new members. There's lots of info on the net aimed at thyroid patients, much of it contradictory and confusing. My aim is to provide a more balanced perspective and information from credible sources.

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Monday, 22 November 2010

Setting up a group in London

For the last couple of weeks I’ve been in discussions with various people about starting up a London group for the patient advocacy charity, the British Thyroid Foundation.

When I was first diagnosed I felt utterly lost and confused and I really wanted a support group of some kind, but couldn’t find one anywhere in the city. There used to be one but it hasn’t been running for a while. There are a few groups in other parts of the country I couldn’t believe there wasn’t one in London. Now it feels like it’s time to do something about it, it feels important and I’m delighted that already I’ve been able to connect with some other people who agree with me and have said they will help get something off the ground. Massive thanks to everyone who has offered support already, you know who you are. If you’re reading this and would like to get involved – please get in touch!

So, what sort of group will it be? I’ve committed to the BTF that we’ll do at least 2 meetings a year with an external speaker and I’m aiming for the first one to be in March. That means I want to have an initial planning meeting with interested parties sometime in January. What I’d really like is to be able to help bring people with thyroid issues together so they can support each other and I’m hoping that these big information meetings may act as a platform for smaller groups to form. So ultimately I want to create something like a London network of people with thyroid issues.

I’ve seen peer to peer support groups operate incredibly successfully in other arenas and I see a real opportunity for thyroid patients to be connected in this way.

The other thing I really want to achieve is to help our voices be heard by the medical profession.Those who have chosen to make a career out of healing are often working under a lot of pressure and can sometimes lose sight of the patient perspective. I would love to be able to make a difference to how thyroid patients are perceived and treated by the medical professionals whose job it is to help them. I think it’s so important that people’s voices are heard and that we are treated with respect and consideration and that when we’re ill we are provided with the information we need, in a way that we can comprehend, to be able to make informed choices about treatment options.

I believe that better outcomes can be achieved by patients and practitioners working in partnership.

Oh and it would be good to help increase awareness of thyroid disease with the wider public. I’ve been professionally involved with campaigning for breast cancer awareness for the last few years, using the iconic pink ribbon so cleverly invented by Estee Lauder. It would be amazing if the butterfly symbol for thyroid disease could start to become something that more people might recognise and understand. I wish I’d understood more about my thyroid before I was diagnosed and I wish other people had a better awareness of what my illness entails, so many just don’t “get it” at all! I guess I’m hoping that mobilising a group in London might also be one small step towards that goal as well.

So I’m starting to seek other individuals and established groups who might be able to offer practical help or share their insights. I’m looking into possible venues and potential speakers for our first meeting, I’m thinking about how to divide up all the things that will need to be done to ensure the new group can run smoothly and not take up too much time to run. I’m feeling quite excited.

This weekend I went to visit the Milton Keynes group committee who have been established for 9 years and were meeting to plan their next big information event, which takes place on 4th December at the OU in Milton Keynes. They were a warm and inspiring bunch of women who gave me lots to think about and have offered to come down to London to help with our first meeting.

If you have any words of wisdom to offer, or would like to get involved, please get in touch...I’d love to hear from you.

3 comments:

Hey there - I just followed the link on your name from the DT website (it seems like it should have taken me to your DT page, but I still haven't figured out how that whole thing works) - wanted to say that you're not alone in your exasperation at not having been taught more about your thyroid in school. I'm a psychology major and still spent a decade trying to make sense out of what my doctors were calling a manic episode (turned out to be hashitoxicosis as far as anyone can tell now) when I knew it didn't quite mesh with what I knew about bipolar disorder. Thyroid problems had been briefly mentioned as something that could mimic manic episodes, but obviously even as someone who was searching for alternative explanations for my experiences it still wasn't emphasized enough for me to make the connection. I could have saved so much time...I keep hoping I'll set up a blog to talk about my experiences, but so far I haven't done it. I've just started using Tumblr, though, so who knows. I'm glad people like you are out there! I can't find anyone in my life who really "gets" the thyroid issues, so even being able to read someone's blog can be an amazing tool in making myself feel less insane.

Hi Drucat, thanks so much for following me from DT, I'm so pleased you like my blog and will look forward to reading you on Tumblr too, sharing our experiences is so key to helping us feel less alone. I am overdue for a post on here, will get one up in the next few days and hope you'll find it interesting, we had a great meeting here in London yesterday and I can't wait to share about it, we covered some areas that sound like they will be close to your heart.

Nat! I can't believe I've got you into Soft Cell, what a hoot, you must get their Album, Non Stop Erotic Cabaret, the whole thing is genius! I think Frustration is on there but may have been a separate single released around the same time. Keep in touch. sending a hug. :)